Widespread twitching with weakness

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Stancullen

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Mar 3, 2020
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Learn about ALS
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I’m a 34 yr old male and I’m worried about what’s happening to me, I’ll keep it as brief as I can.
About 12 - 18 months ago I started having a vibrating sensation in my right leg, it then started to twitch occasionally and then the twitching became more frequent and is now every day over a dozen times per day. They slowly started affecting other areas like if it were spreading so to speak, with this I started feeling weakness in my leg then both legs, now with time my whole body feels weak and my entire body twitches especially my left hand which is almost constant daily.
I have twitching in almost all parts of my body and my left hand shakes With my thumb twitching, I have painful cramps in my thighs, back, neck, arms and shoulders.
This has progressed to difficulty in breathing as if I’m breathing through a straw on a daily basis, I feel as though my body is shutting down and I’m now so clumsy dropping things and stumbling and cannot do things I could a year ago and struggle with simple things I found easy 6 months ago.
I have been to my GP a dozen times had normal MRI of entire spine, normal chest CT, a normal brain MRI, normal blood work, normal spirometry
I have tried physiotherapy, chiropractors, ortho, vitamins, medication, injections, message and heat none of which were affective and baffled by my symptoms just keep telling me for a specialist opinion.
I have been referred to neurologist and their secretary stated it’s marked as an urgent appointment although this is a 4 month waiting time in my area.
I feel quite scared as something is very wrong with me and I feel as though my body is shutting down.
Has anybody had symptoms like these that could shed some light on what could be happening to me
 
Please read this if you have not already done so

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. ALS is about failing, not feeling weak. Did your GP find any weakness on exam?

The good news is that you are not describing ALS. And if you had shortness of breath due to ALS, the pulmonary function tests would have showed abnormalities.

I suspect you have a benign cramp fasciculation syndrome. I’m sure the visit to the specialist will reassure you. Meanwhile, continue stretching and regular moderate exercise with an emphasis on walking, swimming, Tai Chi, yoga. Make sure you’re keeping well-hydrated and reduce or avoid caffeine intake.
 
Thanks for your reply I haven’t been tested for muscle weakness nor problems, if it were benign fasciculatiom syndrome does this progress? As my symptoms are worsening every few months could this be autoimmune??
 
You had all those tests and no one did a clinical exam on you? The physiotherapist and your gp?
 
Yes of course physical exams nothing else regarding muscles nobody has mentioned weakness to me they have said I have very stiff muscles and been working to loosen them up with little effect
 
If they didn’t notice weakness and you haven’t had failure, then you don’t need to be concerned about ALS. Please work with your doctors regarding your other concerns.
 
I thought this forum was to connect with other people having similar symptoms, haven’t came here for a diagnosis my neurologist will do that but to see if this is a common thing to ease worries and talk with other about their experiences. after reading a lot of other posts the admin seem to rinse and repeat “it’s not ALS” think Im in the wrong forum
How do I delete my account please
Thanks again for your comments
 
You have not described weakness, or failure rather, at all. Therefore, being that ALS is a disease where the brain stops communicating with voluntary muscles, you've not described ALS in the slightest. The hallmark of this disease is an inability to do what you could before-buttons, water bottle caps, cut your nails, cut your food with a knife, hold a fork or glass properly, raise up on your toes, or go back on your heels. Great news is that you dont need to be here.

Good luck to you.
 
I googled widespread twitching forums and I found this with a lot of people asking the same questions as me I’ll give the internet a miss I think
Could you tell me how to delete my account please
Thanks
 
The purpose of the subforum “Could this be ALS?” is for concerned people to ask a few questions and get opinions from members. The purpose of the forum in general is to support those diagnosed with ALS, their caregivers, and families. Undiagnosed people may message one another though their profile posts.
 
Ok I see thank you how do I delete I’m in the wrong forum my mistake
 
We will close your thread.
 
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